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Palliat Support Care. 2009 September ; 7(3): 315. doi:10.1017/S1478951509990241.
Development and validation of the Family Decision-Making Self-

Efficacy Scale
MARIE T. NOLAN, PH.D., R.N.1,2, MARK T. HUGHES, M.D., M.A.2,3, JOAN KUB, PH.D., R.N.
1, PETER B. TERRY, M.D., M.A.2,3, ALAN ASTROW, M.D.4, RICHARD E. THOMPSON, PH.D.
5, LORA CLAWSON, M.S.N., R.N., N.P.3, KENNETH TEXEIRA, PH.D.6, and DANIEL P.
SULMASY, M.D., PH.D.6,7
1School of Nursing, Johns Hopkins University, Baltimore, Maryland 2 Berman Institute of Bioethics,
Johns Hopkins University, Baltimore, Maryland 3 School of Medicine, Johns Hopkins University,
Baltimore, Maryland 4 Division of Medical Oncology and Hematology, Maimonides Medical Center,
Brooklyn, New York 5 Bloomberg School of Public Health, Johns Hopkins University, Baltimore,
Maryland 6 St. Vincent Catholic Medical Centers, New York, New York 7 New York Medical College,
New York, New York
Abstract
Objective—Several studies have reported high levels of distress in family members who have made
health care decisions for loved ones at the end of life. A method is needed to assess the readiness of
family members to take on this important role. Therefore, the purpose of this study was to develop
and validate a scale to measure family member confidence in making decisions with (conscious
patient scenario) and for (unconscious patient scenario) a terminally ill loved one.
Methods—On the basis of a survey of family members of patients with amyotrophic lateral sclerosis
(ALS) enriched by in-depth interviews guided by Self-Efficacy Theory, we developed six themes
within family decision making self-efficacy. We then created items reflecting these themes that were
refined by a panel of end-of-life research experts. With 30 family members of patients in an outpatient
ALS and a pancreatic cancer clinic, we tested the tool for internal consistency using Cronbach’s
alpha and for consistency from one administration to another using the test–retest reliability
assessment in a subset of 10 family members. Items with item to total scale score correlations of less
than .40 were eliminated.
Results—A 26-item scale with two 13-item scenarios resulted, measuring family self-efficacy in
decision making for a conscious or unconscious patient with a Cronbach’s alphas of .91 and .95,
respectively. Test–retest reliability was r = .96, p = .002 in the conscious senario and r = .92, p = .
009 in the unconscious scenario.
Significance of results—The Family Decision-Making Self-Efficacy Scale is valid, reliable, and
easily completed in the clinic setting. It may be used in research and clinical care to assess the
confidence of family members in their ability to make decisions with or for a terminally ill loved
one.
Keywords
Decision making; Self-efficacy; End of life; Family; Scale
Address correspondence and reprint requests to: Marie T. Nolan, School of Nursing, Johns Hopkins University, 525 North Wolfe Street,
Baltimore, MD 21205. mnolan@son.jhmi.edu.
NOLAN et al. Page 2
INTRODUCTION
The purpose of this article is to describe the development of a scale that will allow us to
understand the level of confidence that family members have for participating in health care
decisions for terminally ill loved ones. We first identified a need for such a scale when our
study of terminally ill patient decision making revealed that a high percentage of patients
preferred shared decision making with family. The challenge, however, is that family and other
surrogate decision makers are often unprepared for end-of-life decision making and many
report high levels of distress from this role (Teno et al., 1997; Tilden et al., 2001; Sulmasy et
al., 2006). There is a dearth of measures to assess advance care planning (Mularski et al.,
2007), and, although there are instruments to measure how confident family members are in
their caregiving roles (Steffen et al., 2002), we found no instruments that measured family
members’ confidence in their ability to take part in health care decision making with or for a
terminally ill loved one. In this article we describe the development and validation of the Family
Decision-Making Self-Efficacy Scale. The scale has two scenarios that reflect how family
participation actually occurs. The first covers decisions when the patient retains the capacity
to participate, and the second covers decisions made on the supposition that the patient lacks
decisional capacity. For simplicity, we refer to these as the conscious and unconscious
scenarios within the scale.
Background
Our study of the natural history of end-of-life decision making in 130 patients with end-stage
cancer, heart failure, or amyotrophic lateral sclerosis (ALS) examined how patients preferred
to involve their family and physician in health care decision making. When considering family
involvement, 44% preferred to share decision making equally with a family member. When
considering both family and physician involvement given a hypothetical situation in which
they would not have decisional capacity, 33% of patients preferred that their family’s input be
given greater weight than their physician’s input (Nolan et al., 2005). When we followed
patients for 6 months, these preferences did not change significantly (Sulmasy et al., 2007).
This stability of patients’ preferences for family involvement is good news for the timing of
advance care planning. Health professionals can begin these discussions soon after the patient
has been identified as having a terminal illness. Having a method to measure the family
members’ confidence in their ability to participate in decision making at the level desired by
the patient could greatly enhance advance care planning.
Defining the Construct of Family Decision-Making Self-Efficacy

As part of the natural history of end-of-life decision making study described above, we
interviewed a subgroup of 16 family members after the death of their loved one. We found that
only 50% of patients who preferred shared family decision making actually experienced this
at the end of life (Nolan et al., 2008). Using in-depth qualitative interviews with the family
members, we used a directed content analysis approach in which open-ended questions
regarding the phenomena of interest are used to start the interview followed by more structured
questions using existing theory (Hsieh & Shannon, 2005). In this case, we started with broad
questions about the types of health care decisions made near the death of the patient and how
they were made. Following this, we asked more structured questions based on Bandura’s
(1997) Self-Efficacy Theory. This theory states that self-efficacy or confidence that one can
perform a behavior is influenced by three main factors: previous performance of the desired
behavior, vicarious experience of observing others perform the behavior, and positive feedback
that one can successfully perform the behavior. In the structured phase of the interview, we
asked family members whether they had any previous experience in health care decision
making with or for a loved one near the time of death, whether they had observed another
person make these types of decisions, or whether they had received positive feedback from
NOLAN et al. Page 3
anyone regarding their ability to participate in these types of decisions. We also asked whether
there were other things that made their participation in these decisions easier or more difficult.
We analyzed family member responses and identified six main themes: being a surrogate,
choosing treatments, accepting palliative care, meeting spiritual needs, maintaining family
harmony, and communicating with health professionals (Nolan et al., 2008).
METHODS
Content Validity
From the six themes of family decision making self-efficacy, we developed 23 items with a 5-
point Likert Scale ranging from 1 (“completely disagree”) to 5 (“completely agree”) for the
first version of the Family Decision-Making Self-Efficacy Scale. We then provided a copy of
these items to a multidisciplinary panel of end-of-life decision-making researchers including
a doctorally prepared nurse, a psychiatrist, and an internal medicine specialist. We asked panel
members whether or not each item reflected the theme of decision-making self-efficacy it was
meant to represent. We also asked them to recommend wording for any item that would
improve clarity, brevity, grammar, or other aspects of the tool. Finally, we asked panel members
whether, collectively, all of the items provided a representative sample of the domain of items
that measure family member perceived self-efficacy in decision making for a terminally ill
family member. Based on panel member input, we revised several items to make them more
specific.
One reviewer recommended that the scale accommodate both a single family member who
would be the decision maker with or for a terminally ill loved one and the situation in which
several family members would serve in this role. We addressed this concern by giving the
following directions at the start of the scale, “In some families, one person makes health care
decisions with a sick loved one. In other families, several family members or friends make
decisions with the sick loved one. When answering the questions below, please keep in mind
your particular situation.” We wanted to allow for one person to complete the scale with input
from others without requiring each family member to complete his or her own scale. We also
changed the anchors to “cannot do at all” to “certain I can do” to more clearly reflect the
construct of self-efficacy on which the scale was grounded. The conscious scenario in the tool
has the stem, “If my loved one prefers to have help in making health care decisions, I am
confident that I will be able to help: …”. The unconscious scenario begins with, “If my loved
one becomes too ill to make health care decisions, I am confident that I will be able to: …”.
Pilot Testing the Scale

Sample—We obtained approval from the Johns Hopkins Medicine Institutional Review
Board for a pilot study of this instrument as part of a larger pilot study of a family decision-
making self-efficacy intervention. This intervention study, which took place in the out-patient
setting, involved a brief guided patient–family discussion of the patient’s desire for involving
family in health care decisions and the family member’s confidence that he or she could take
on this role. The discussion was tailored to address any low levels of family decision-making
self-efficacy followed by recommendations for further discussion at home. Inclusion criteria
for patients were having a preoperative appointment in the surgical clinic for pancreatic cancer
or in the ALS Comprehensive Care Clinic, 18 or older, and able to read and write in English.
These two disease groups were selected because of two different trajectories to the end of life;
one is characterized by a rapid decline (pancreatic cancer) and the other by a gradual decline
in health status. Inclusion criteria for family members were having a patient who met the study
inclusion criteria who consented to inviting the family member to participate, 18 or older, and
able to read and write in English.
NOLAN et al. Page 4
Procedures—A caregiver in the clinic asked patients if they would like to hear about this
study, and if the patient was interested, one of the research team members described the study
and obtained written consent from interested patients and family members. In most cases, the
family member accompanied the patient to the clinic. Twenty-six patients (46%) approached
to participate declined, so their family member was not invited to participate. Thirty patients
and family members consented to participate and were enrolled. We gave family members both
the conscious and unconscious scenarios within the Family Decision-Making Self-Efficacy
Scale in the clinic at baseline along with a demographic form that we developed.
We tested the interitem correlations and item to total scale correlations using the Pearson’s
Correlation to determine the internal reliability of the scale. We dropped items from the scale
that had at least one interitem correlation less than r = .40. Then we tested item to total score
correlations. Once a final version of the scale was obtained, we used the Cronbach alpha test
to measure the internal reliability of each version of the family decision-making scale. We also
performed a test–retest reliability on a subsample of six family members at baseline and at 4
weeks. During the pilot, we dropped one additional item that asked the extent to which the
family member felt prepared to discuss the patient’s funeral if the patient wanted to discuss
this. This was deleted as a family member thought that this was an upsetting question. The
final conscious and unconscious scale versions are in Appendixes I and II, respectively.
Known Groups Validity—According to Self-Efficacy Theory, family members with

experience making decisions for an ill loved one should have greater self-efficacy for this
behavior than those without this experience. In our qualitative work and the qualitative work
of others, surrogate decision makers have described this type of experience as helpful in
preparing them for the decision making role (Vig et al., 2007; Nolan et al., 2008). Also, previous
studies of caregiver self-efficacy have revealed that spouses have lower levels of self-efficacy
compared to nonspouses (Depp et al., 2005). To test these relationships in this study, we used
Student’s t test for independent groups to see if there was a difference in the family decision-
making self-efficacy between those with and without experience with this type of decision
making and whether there were differences between spouse and nonspouse family members.
RESULTS
We recruited a convenience sample of 30 surrogates of patients with pancreatic cancer or ALS.
Table 1 provides a summary of the patient and family characteristics.
Psychometric Properties
After we dropped items that had interitem correlations of less than .40, 13 items remained in
the conscious version of the scale and 13 items remained in the unconscious version of the
scale. They were not the same items, however. So, we identified a subscale with an overlap of
9 items common to both versions of the scale for use by investigators or clinicians who desired
to compare the scores on the conscious and unconscious versions of the scale (see Appendix
III). For each version of the scale, we determined an item to total scale score correlation. See
Table 2 for item to total score correlations in the conscious version of the scale and Table 3
for item to total score correlations for the unconscious version of the scale.
The 13 items within the conscious scenario of the scale had strong internal consistency
(Cronbach’s α = .91) as did the 13 items within the unconscious scenario of the scale
(Cronbach’s α = .95). The test–retest reliability using Pearson’s Correlation was r = .96, p = .
002, in the 13-point conscious scenario and r = .92, p = .009, in the 13-point unconscious
scenario. For the 9-item overlap subscale, Cronbach’s α was .91 for the conscious scenario
and .93 in the unconscious scenario. Test–retest reliability was r = .97, p = .001, in the conscious
scenario and r = .90, p = .01, in the unconscious scenario.
NOLAN et al. Page 5
Table 4 summarizes the differences in self-efficacy by status as spouse or nonspouse or by the

family member’s experience or lack of experience with making decision for a terminally ill
family member. Family members who had experience making decisions for an ill family
member had higher levels of decision making self-efficacy (M = 61.00, SD = 5.68) compared
to those without this experience (M = 56.37, SD = 7.81). This difference approached
significance in the unconscious scenario (p = .08). Spouses scored lower than nonspouses
(M = 58.00, SD = 6.68, vs. 62.12, SD = 4.08, respectively, p = .05).
DISCUSSION
The Family Decision-Making Self-Efficacy Scale is based on our previous work in patient
preferences for involving family in end-of-life decision making enriched by in-depth interviews
with family members after the patient’s death. Based on these analyses, the Family Decision-
Making Self-Efficacy tool incorporating the six themes of being a surrogate, choosing
treatments, accepting palliative care, meeting spiritual needs, maintaining family harmony, and
communicating with health professionals shows promise based on acceptable psychometric
properties.
Both the conscious and unconscious versions of this scale have been easy for family members
to complete and revealed high levels of internal consistency reliability and test–retest
reliability. The scales’ ability to distinguish between family members who had experience
making decisions for an ill family member and those who did not warrants further testing with
larger sample sizes. Also, similar to studies of caregiver self-efficacy (Depp et al., 2005),
spouses had lower levels of decision-making self-efficacy than nonspouses, but again this
difference only approached significance and warrants further study. Regarding caregiving self-
efficacy, Depp et al. (2005) suggested that spouses, who are often also the main caregivers of
the dying patients, may be exhausted or may be more self-critical when examining their self-
efficacy. The inverse correlation between family decision-making self-efficacy and caregiver
burden suggests that this may be the case.
We invite other investigators to test the Family Decision Making Self-Efficacy Scale in larger
and more diverse samples of family members with a loved one with a terminal illness. We
believe that having a method to measure family confidence in taking on the decision-making
role will be a great asset to both investigators who wish to test new interventions to promote
advance care planning and to clinicians who would like a simple and efficient way to determine
how confident a family member is in being able to take part in health care decision making for
a terminally ill loved one.
Acknowledgments
We thank Drs. Virginia Tilden, Joseph Carrese, and William Breitbart for their expert review of the Family Decision-
Making Self-Efficacy Scale. We also gratefully acknowledge the financial support of the National Institute for Nursing
Research at the National Institutes of Health (1 R01 NR005224-01A1), the ALS Research Center of Johns Hopkins
University, and the Fan Fox and Leslie R. Samuels Foundation through a grant administrated by Partnership for Caring.
Finally, we thank Ms. Christine St. Ours and Ms. Marian Grant for enrolling and interviewing patients and family
members and for their expert support of this study.
References
Bandura, A. Self-efficacy: The Exercise of Control. New York: W.H. Freeman and Company; 1997.
Depp C, Sorocco K, Kasl-Godley J, et al. Caregiver self-efficacy, ethnicity, and kinship differences in
dementia caregivers. American Journal of Geriatric Psychiatry 2005;13:787–794. [PubMed:
16166408]
Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qualitative Health Research
2005;15:1277–1288. [PubMed: 16204405]
NOLAN et al. Page 6
Mularski RA, Dy SM, Shurarman LR, et al. A systematic review of measures of end-of-life care and its
outcomes. Health Services Research 2007;42:1848–1870. [PubMed: 17850523]
Nolan MT, Hughes M, Narendra DP, et al. When patients lack capacity: The roles that patients with
terminal diagnoses would choose for their physicians and loved ones in making medical decisions.
Journal of Pain and Symptom Management 2005;30:342–353. [PubMed: 16256898]
Nolan MT, Kub J, Hughes MT, et al. Family health care decision making and self-efficacy with patients
with ALS at the end of life. Palliative and Supportive Care 2008;6:273–280. [PubMed: 18662421]
Steffen AM, McKibbin C, Zeiss AM, et al. The revised scale for caregiving self-efficacy: Reliability and
validity studies. Journal of Gerontology 2002;57B:74–86.
Sulmasy DP, Hughes MT, Thompson RE, et al. How would terminally ill patients have others make
decisions for them in the event of decisional incapacity? A longitudinal study. Journal of the American
Geriatric Society 2007;55:1981–1988.
Sulmasy DP, Sood JR, Texeira K, et al. Prospective trial of a new policy eliminating signed consent for
Do Not Resuscitate orders. Journal of General Internal Medicine 2006;21:1261–1268.
Teno JM, Lynn J, Wenger N, et al. Advance directives for seriously ill hospitalized patients: Effectiveness
with the patient self-determination act and the SUPPORT intervention. Journal of the American
Geriatrics Society 1997;45:500–507. [PubMed: 9100721]
Tilden VP, Tolle SW, Nelson CA, et al. Family decision-making to withdraw life-sustaining treatments
from hospitalized patients. Nursing Research 2001;50:105–115. [PubMed: 11302290]
Vig EK, Starks H, Taylor JS, et al. Surviving surrogate decision-making: What helps and hampers the
experience of making medical decisions for others. Journal of General Internal Medicine
2007;22:1274–1279. [PubMed: 17619223]
APPENDIX I: FAMILY DECISION-MAKING SELF-EFFICACY SCALE:

CONSCIOUS PATIENT SCENARIO
In some families, one person makes health care decisions with a sick loved one. In other
families, several family members or friends make decisions with the sick loved one. When
answering the questions below, please keep in mind your particular situation.
If my loved one prefers to have help in making health care decisions, I am confident that I will
be able to help:
1. make decisions about his/her health care.
Cannot do at all 1 2 3 4 5 Certain I can do
2. make decisions that are in his/her best interest.
3. make decisions about how he/she will receive food and fluid.

4. make decisions about whether to stop trying to eat if he/she wants to stop.
5. make decisions about his/her receiving resuscitation.
6. make decisions about where he/she will be cared for at the end of life.
7. make decisions about continuing to fight his/her disease.
NOLAN et al. Page 7
8. make decisions that will help him/her avoid suffering.

9. make decisions that promote his/her comfort.

10. make decisions that are consistent with his/her faith beliefs or ultimate concerns.
11. make decisions that will respect his/her dignity.
12. make decisions that will avoid burdening our family.
13. handle the news if the doctor says that his/her death is near.
APPENDIX II: FAMILY DECISION MAKING SELF-EFFICACY SCALE:

UNCONSCIOUS PATIENT SCENARIO
In some families, one person makes health care decisions for a loved one who is too sick to
make these decisions. In other families, several family members or friends make these decisions
together. When answering the questions below, please keep in mind your particular situation.
If my loved one becomes too ill to make health care decisions, I am confident that I will be
able to:
2. make decisions that he/she would make for himself/herself.
3. make decisions that are in keeping with his/her values.

5. make decisions about whether to stop urging him/her to eat.
6. make decisions about treatments to manage his/her pain.
NOLAN et al. Page 8


13. talk to other family members about his/her health care.
APPENDIX III: SUBSCALE OF OVERLAP ITEMS BETWEEN THE CONSCIOUS

AND UNCONSCIOUS SCALE SCENARIOS
May be used to compare scores in the conscious and unconscious scenarios.
3. make decisions about whether to stop trying to eat if he/she wants to stop.
NOLAN et al. Page 9
Table 1
Family and patient characteristics (N = 30)
Variable %
Patient age Range 38–83, M = 55.62, (SD = 11.67)

Patient sex
Male 52%
Female 48%
Patient disease
Pancreatic cancer 72%
ALS 28%
Family member age Range 35–81, M = 53.32, (SD = 12.04)
Family member sex
Male 40%
Female 60%
Family member race
White, non-Hispanic 83%
White, Hispanic 7%
Black, non-Hispanic 7%
Multiracial 3%
Family member education
High school 37%
College 36%
Graduate/professional school 27%
Family member marital status
Married 90%
Divorced 07%
Never married 03%
Family member religion
Protestant 40%
Catholic 36%
Other 17%
None 07%
Patient is the family member’s

Spouse 73%
Parent 14%
Son/daughter 04%
Sibling 03%
Other relative 03%
Other 03%
Family member experience with decision making
Yes 70%
No 30%
NOLAN et al. Page 10
Table 2
Item to total scale score correlation: Conscious scenarioa

If my loved one prefers to have help in making health care decisions, I am

confident that I will be able to help Item-total correlation
Make decisions about his/her health care. .71

Make decisions that are in his/her best interest. .69
Make decisions about how he/she will receive food and fluid. .70
Make decisions about whether to stop trying to eat if he/she wants to stop. .65
Make decisions about his/her receiving resuscitation. .77
Make decisions about where he/she will be cared for at the end of life. .67
Make decisions about continuing to fight his/her disease. .57
Make decisions that will help him/her avoid suffering. .70
Make decisions that promote his/her comfort. .65
Make decisions that are consistent with his/her faith beliefs. .64
Make decisions that will respect his/her dignity. .67
Make decisions that will avoid burdening our family. .64
Handle the news if the doctor says that his/her death is near. .48
a
All items were ranked on a 5-point scale with 1 meaning “Cannot do at all” and 5 meaning “Certain I can do.”
Table 3
Item to total scale score correlation: Unconscious scenarioa

If my loved one becomes too ill to make health care decisions, I am confident that
I will be able to Item-total correlation
Make decisions about his/her health care. .85

Make decisions that reflect what he/she would want for himself/herself. .83
Make decisions that are in keeping with his/her values. .86
Make decisions about how he/she will receive food and fluid. .80
Make decisions about whether to stop trying to eat if he/she wants to stop. .65
Make decisions about treatments to manage his/her pain. .78
Make decisions about receiving resuscitation. .75
Make decisions about where he/she will be careed for at the end of life. .81
Make decisions about continuing to fight his/her disease. .81
Make decisions that will help him/her avoid suffering. .85
Make decisions that will promote his/her comfort. .90
Make decisions that will respect his/her dignity. .87
Talk to other family members about his/her health care. .85
a
All items were ranked on a 5-point scale with 1 meaning “Cannot do at all” and 5 meaning “Certain I can do.”
Table 4
Differences in family decision making self-efficacy by status as spouse or experience as a surrogate decision
maker
Spouse of patient Mean self-efficacy conscious t df p (2-tailed)
Yes 58.00 −2.0 20.7 .05

No 62.13
Experience as surrogate Mean self-efficacy unconscious t df p (2-tailed)
Yes 61.00 1.76 27 .08

No 56.37

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Palliat Support Care. 2009 September ; 7(3): 315. doi:10.1017/S1478951509990241.

Development and validation of the Family Decision-Making Self-

Defining the Construct of Family Decision-Making Self-Efficacy

Pilot Testing the Scale

Known Groups Validity—According to Self-Efficacy Theory, family members with

Table 4 summarizes the differences in self-efficacy by status as spouse or nonspouse or by the

2007;22:1274–1279. [PubMed: 17619223]

APPENDIX I: FAMILY DECISION-MAKING SELF-EFFICACY SCALE:

Cannot do at all 1 2 3 4 5 Certain I can do

8. make decisions that will help him/her avoid suffering.

9. make decisions that promote his/her comfort.

APPENDIX II: FAMILY DECISION MAKING SELF-EFFICACY SCALE:

Cannot do at all 1 2 3 4 5 Certain I can do

9. make decisions about continuing to fight his/her disease.

10. make decisions that will help him/her avoid suffering.

APPENDIX III: SUBSCALE OF OVERLAP ITEMS BETWEEN THE CONSCIOUS

Patient age Range 38–83, M = 55.62, (SD = 11.67)

Patient is the family member’s

Item to total scale score correlation: Conscious scenarioa

If my loved one prefers to have help in making health care decisions, I am

Make decisions about his/her health care. .71

Item to total scale score correlation: Unconscious scenarioa

Make decisions about his/her health care. .85

Spouse of patient Mean self-efficacy conscious t df p (2-tailed)

Yes 58.00 −2.0 20.7 .05

Yes 61.00 1.76 27 .08

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